We had the pleasure to have Carol speak to our staff and share her experiences with us. She echoed so much of what we hear from the families we work with—the frustrations, joys and the journey of caregiving. At Aging Wisely we are so privileged to be part of our clients/families’ journeys and try to walk hand in hand with them through the tough times. We know how isolating it can be and we hear time and time again about the difficulty of getting good, reliable information when it is most critical. We work hard every day to guide caregivers through what can truly be a maze and hopefully give them the gift of time to focus on their loved one—being that daughter or son, rather than fighting battles with insurance companies, searching for resources, and the endless tasks that can take over being in the here and now. Carol’s words remind us of the importance of this work, and we thank her for sharing her experience both through her book and her presentation.

Q: Why did you decide to write your caregiving story?

A: I believe in a cathartic value of writing. It’s always been my “mode of transportation.” I journal to work out things in my mind, as a form of prayer, as a way to understand myself and others, so it was rather natural for me to turn to writing during a very stressful time in my life–in this case, caregiving. By observing what’s happening in my life (by writing it down), I’m able to see the bigger picture, keep it all in perspective, and feel that I’m capturing some of the moment’s richness and texture on the page.

I think journaling gave me a place to put some of my emotions as a caregiver. I could vent on the page, cry and question and even gather our family memories and feel that I was preserving them. It gave me something to do with myself–something other than the physical work or the mental anguish of having so little control over disease, the dying process and all the fears and frustrations that come with it.

Q: What do you think are some of the top things we (society) are missing that could help caregivers?

A: I’ll focus on one area for today because I believe this message is so important. One of the major glitches is COHESIVE AND TIMELY INFORMATION. There are lots of resources out there for many caregivers in most communities–and yet, they don’t know about it. Caregiving is isolating in many regards–physically, emotionally, mentally. Caregivers shouldn’t have to be the ones to go on the scavenger hunt to try and piece this all together. Every doctor, hospital, home health care, pharmacy, church/synagogue, and other “stations” of the community should all have the same information that’s updated and available to every caregiver, so that when a caregiver steps into their community (of course, it should be readily available on the Internet as well) they find the help they need.

Q: What are some of the things you could have used as a caregiver?

A: As I mentioned above, cohesive and timely information–and then follow-up care. I did receive help with my mother, but it was sporadic and blotchy. She qualified for home health care (under her insurance) for 6-8 weeks after a hospital stay, which was great, but the time and effort it took to set it all up, get on a routine, and feel like we were making some progress was short lived. It was over. I had no choice to continue this level of help or care–even if I offered to pay for it, which I think should be an option. It’s so hard to find care providers who “click” with your family, and when you do, you’d love to keep them.
Also, when I was handed information, it was piecemeal–here and there–with little or no explanation.
You have to realize that as a sandwich generation-er, I was an active mom and wife in my thirties and then early forties. I was busy driving my children to ballet practice, piano and horseback riding lessons. Then, as a caregiver, I was thrust into the medical world with terms such as DPOA, DNR and Living Wills. I had no idea how to connect the dots. I didn’t have the time or energy to catch up on this steep learning curve of medicines, insurance, doctors, home health care, care facility options, medicare, etc. Most caregivers need a few sessions or a workshop/and cohesive materials to be explained to them, so they know what comes first, what choices they have, and to begin to write down a short term and long term plan not only for their loved one, but for themselves–a strategy on how to manage their caregiving years/role. See? Even talking about it sounds complicated and exhausting!

Q: How did the years your Mom was living with you affect you and your family? Positive and negative?

A: I think it defined and redefined how much we were (and are) a true family. I think overall, it was good for our children to feel needed, to have to sacrifice a little bit of time, effort and to share mom a bit. At times, we all perhaps sacrificed a bit too much. Caregiving and family life cannot be controlled 100%. People can’t. If you think it’s not going to get messy, you’re mistaken. If you think you better not try it–get involved because things can get chaotic, scary, painful, then you better not parent or caregiver, because let me tell you, parenting takes a toll on you as well, but you do it because we need each other. We need family life–to be born or brought into a loving environment to live, learn and work out life with people who have committed themselves to us–and us to them. That’s family. Yes, caregiving is yet another aspect of family life. It shouldn’t surprise us that as the old saying goes, “what goes ’round, comes ’round.”

There are times when parenting has been heartbreaking, scary, lonely, overwhelming, and yet, I’m honored and grateful to be a mother. Caregiving is the same way. Even if your loved one’s care grows to be too much for you to physically or emotionally handle by yourself or in your own home, and your loved one needs more care and needs to live in a care community, you still need to be an active part of their life–an advocate to make sure they’re receiving not only proper care, but that they still feel your love and your connection to them.

Even with what I know now. Even as hard as caregiving was at times. I’m glad I did it. It taught me so much about myself, my family, my legacy, my womanhood. I know the price. I know the commitment, and I still say wholeheartedly, I’m grateful for this experience.